Life in the Blueberry Patch

Things not to say to someone with a chronic illneess

I have received a lot of well-intentioned comments on my being diagnosed with interstitial cystitis over the past few years. Because it’s a rare and unknown disease, most people didn’t know what to say, and quite a few of the comments weren’t what I needed to hear in the place I was in at that moment. I don’t begrudge people for trying, but I thought it might help to share a few thoughts on things not to say to someone with a chronic illness.

1. I would die if I had to live like that.

No, you wouldn’t. This one I might hate the most, because to me it sounds a little like “your life isn’t worth living.” You would adjust and adapt, and it might suck, but you wouldn’t die. Chronic illnesses can require a lot of lifestyle adjustments, particularly for ones that aren’t currently curable or treatable by modern medicine. Significantly changing your lifestyle is by no means fun, but it’s not deadly.

What to say instead: That sounds really hard. How are you adjusting?

2. Have you tried acupuncture, this doctor, this herb, standing on your head, sleeping more, seeing an astrologist, drinking dragon’s tooth tea? I have a friend of a friend who had something like that and they did this so you should too.

Unless you are a trained medical professional in that area, or you, your spouse, or child have had this disease – do not offer advice. Particularly if the disease is incurable/untreatable, because trust me, the person in question has already researched every legitimate and baloney treatment out there. There’s a pretty likely chance that the friend of a cousin of a friend you are talking about did not have the same condition anyway. Granted, this isn’t limited to well meaning friends/family/strangers – my urologist suggested I try a lemon juice cleanse. *Facepalm*

What to say instead: What are you doing to take care of yourself?
Or if you are really pretty sure you have some good advice/know someone who does: “Would you want me to ask my cousin who has the same condition for some advice?” or “I’ve heard a little about this if you want me to throw some things out there to try.” But don’t force it.

3. At least it’s not _________ (cancer, typically).

This is a big one. If you read any of this, read this one. DO NOT SAY TO SOMEONE “AT LEAST IT’S NOT….” Here’s why:

You probably don’t have a good understanding of what they are going through. With IC for example, the pain and influence on lifestyle has been rated to be on par with having cancer or being on kidney dialysis, two things which we know aren’t small potatoes. And here’s the thing, you don’t know where they are emotionally with their illness. In my darkest moments soon after getting diagnosed, I wished I had cancer. Don’t get me wrong, I am grateful I don’t and am not trying to minimize the pain of those who do. But in my head, at that time, cancer was either a) treatable, or b) fatal. When I was in the height of pain, the thought of living with that pain for the next 60 years seemed unimaginable. When I first went to the doctor with what I thought was a stubborn bladder infection that might need an extra dose of antibiotics, coming out with a lifelong illness that would never be cured was not a good feeling. Going for a screening months later that ruled out cancer, sure – finding out I didn’t have cancer then was a relief.

Here’s the other thing: you can’t compare suffering. Yes, some suffering is objectively worse than others. But when your heart is full of pain – it is full. It doesn’t matter to you that you would be able to stand more pain if something worse happened, your heart still just feels full. You wouldn’t tell a mother who lost a child at least she didn’t lose all her children. You wouldn’t tell someone who lost their house in a fire that at least they don’t live in a war torn country. Don’t try to compare suffering, ever, in any circumstance. You won’t make people feel grateful for what they have, you won’t shed a happy light on the situation, you will only make them feel guilty for feeling bad for themselves. And sometimes, it’s OK to feel sorry for yourself.

What to say instead: How did you react to the news? Were you disappointed or relieved?

4. That sucks. Hey! Did I tell you about the annoying thing my co-worker did the other day?

Pretending nothing wrong is annoying too. Someone you care about just went through a huge life changing diagnosis (or is trying to find a diagnosis for a difficult illness). Even if you don’t “get it,” offering a little (or no!) pity and then just moving on isn’t helpful either. When I was diagnosed with IC, it was like being hit with a mac truck (says someone who has never been hit by any vehicle). My life would not be the same. My husband’s life would not be the same. I didn’t know if I’d ever be able to hold a full time job, if I could have kids, if I could ever travel to all the far off destinations I dreamed of, if I could ever eat my favorite foods again, go a day without debilitating pain, go an hour without having to find a restroom, or even just live a normal life. It was a big.f-ing.deal. And so I told my close friends, who ranged from sympathetic, to confused, to a little uninterested. When I’m with people I don’t know well, I play it off like it’s an annoying allergy .”Oh yeah, I just can’t digest acid properly so no beer for me!” But the truth is, it’s way more than that. (And the diet much more serious than some fad diet!) So it can hurt when people just ignore it too.

What to say instead: Hey, I’m really sorry about that. Do you want to talk about it?

In conclusion

If your words are well intentioned, you won’t hurt people by them. But please, don’t try to minimize someone’s pain or to over dramatize it. It won’t make them feel better. Be there to listen and offer love and support.

In the reader’s defense, most people don’t know where that line between minimizing pain and dramatizing it lies.

#4 isn’t meant to trivialize your illness, but is usually made out of panic. Very, very few people can empathize, and often have no clue what to say. I seriously doubt the topic-switch is an effort to minimize your pain. They might think you’re sick about talking about being sick.

Most people probably don’t special insight into pain (#2, #3), or do they even understand the tip of the iceberg of how it’s affected your life. Is the education-of-my-disease conversation something you’re prepared to launch into every single time? Without the knowledge of how pervasive it is in your everyday life, it’s difficult to know how deep to inquire and how much someone wants to talk about it. People’s experiences of long-term pain and illness are usually limited, and always very personal. It’s difficult to know how to gracefully communicate those feelings (or lack-thereof) into a personal conversation.

#1…..that is a little more thoughtless. Your response should just be “well, it’s a good thing I’m not you then” ;-). I feel like it’s usually said out of a naivete of difficult situations, but it is meant from a place of admiration of your strength.

The sympathy is genuine, but without having been there themselves, they don’t how how unhelpful or shortsighted the comments may be.

Well the idea is if you are already talking about it, then yeah, I’d be okay talking about it.

I stand by what I said though. There’s no reason ever to offer advice when you don’t know what you are talking about. And there’s no reason to say stuff like “oh well at least it’s not cancer!”

And it’s not great to just pretend like it’s not a big deal either. If it’s someone who would be really uncomfortable talking about it, I wouldn’t have brought it up to them. These are all comments I’ve gotten from people I was close to.

Well, if it’s unsolicited and unprofessional advice you have an issue with – wait until you enter the world of motherhood and get all sorts of tidbits from childless friends! I hear it’s bad. Especially with Oprah, she’s the ringleader.

Still, you might be having these conversations with close friends, but you can’t hold it against them for not knowing the right or perfect thing to say. Guides like this are helpful: education makes a much more lasting impact.

Yeah sister. You are right on the money. I have my own phrase I got tired of, from before I was diagnosed, when I was spending every other work day compulsively vomiting for about three months, and people would joke with me “are you pregnant?” Um, no, I’m not, I’m wicked wicked sick and don’t appreciate your jokes about my personal life.

Thank you for this. I have a few friends who have chronic illnesses and I never know what to say to them. Thankfully I haven’t made any of the snafu’s listed above, but I’m sure I’ve made some other stumbles along the way. My go-to is usually something along the lines of, “I’m so sorry. How are you holding up? Is there anything I can do?” Beyond that, it’s all very confusing. You know? What do you say? This has given me some ideas though.
These posts are always helpful because it’s something that, although you may not run into it on a daily basis, it’s certainly something that could be easily run into. A friend of mine posted a blog about what not to/what to say to a mother who has lost a child. I have more friends than I care to count that have lost children and that really helped me figure out helpful ways to be supportive. Your post here is doing the same thing. 🙂

God bless you and heal you! I understand as I am in the ‘middle’ (I call it that not really knowing if it is the middle or something that will last forever!) of a horrible painful illness that has lasted over five years now with no end in sight but some improvement. It has caused immense overwhelming depression and anxiety, the horrible suicidal kind. And people think it is so wise to tell me,”Well, you know, there are other people out there who are suffering so much more than you (usually they mention cancer).” When my doctor said that I finally burst out with, “Yeah, knowing there are crack babies out there makes me feel just sooo much better! Thanks!” He looked properly shamed and said, “I shouldn’t have said that, should I?” Ya’ think? I think when people tell me that that they are either feeling helpless and think that I’ll feel better knowing I COULD be suffering a whole lot more, or they are sick of hearing me say I don’t feel good and want me to stop ‘whining’. Sorry about the whining, but, walk a mile in my shoes! My prayers are with you and I really appreciate the stance you have taken on gay marriage as I have a gay son, the light of my life. I just got done commenting on another one of your entries that really touched my heart! Thank you so much!

I know I gave you an earful on obamacare. Know I really do write in peace and searching and in trying to find the actions I need to take in my own life based on my experience in health care.

I had to stop and say I understand chronic illness. I understand people not having any idea what you are experiencing. I understand wishing it were cancer. I understand medical bills. I have insurance but it is so crappy the doc that treats me won’t take it. So I pay my premiums and pay $120 out of pocket per visit. I have been seriously disabled in the past by mental and physical illness. (Although fortunately they were not at the same time!) At present I have to take medication 6 times a day but I am at a good functional level. It is a very lonely experience being young and dealing with illness that not many understand.

You will get thru this difficult time. Life will get easier. Just keep taking each day as it comes or each hour if it gets that difficult. Praying for you for a successful move and bar exam for your husband. And for grace to deal with your darkest moments.

I have Sickle Cell disease and I’ve heard most of these…and #3 was THE MOST infuriating & hurtful thing I have heard. And the delivery of it was even worse. It was said as if *I* was the biggest moron on earth like: “What’s the big deal? It’s not like you have cancer or anything.” I think it’s a good thing that I was stunned speechless & immobile because I probably would’ve gotten arrested for assault & battery at the least, attempted murder at the worst!!!! I’m in the hospital now as I type this. A good year is for me is being hospitalized maybe 3 times out of a year, but during one of my worst years, I spent a collective 7mos in the hospital. I’ve had one too many close calls w/ death and out of 365 days in a year, I am in pain for about 350 of those. I have had both of my shoulders & my right hip replaced because the bones died from poor blood supply and I am in iron overload from too many blood transfusions. With too much iron comes more organ damage. I could write a book about this. I have lost MANY FRIENDS & MY OWN BROTHER TO THIS HORRIBLE, TERRORIZING DISEASE!!! So to be told something like that is a slap in the face and it tramples the memories of those that I’ve lost. Not to mention every other person who lost their battles with Sickle Cell Disease. People need to let go of ignorance and grab ahold of some education. This is NO picnic!!!

Well, having IC myself, as well as other invisible chronic painful illnesses, I totally agree with all you said in your post. I might add that when I lost my lovely daughter to a sudden illness 5 years ago, I also heard, “I would just die if that were me.” I wanted to ask them how they would “just die.” Did they think they could wish it to happen? Tried that. Active suicide? Thought about but had other children who depended on me. I’m also a psychotherapist (or was until totally disabled) and I feel confident in writing that if a person is truly your friend, they will listen to not only your words but also your nonverbal communication. And a true friend will choose to help rather than tear down. It’s a heck of a way to weed out pseudo-friends, isn’t it?

I went to see my physical therapist and she tells me she is seeing a patient who is much worse of than I am ,Like she is just learning of her illness and doesn’t know how to deal with it as well as I do,It made me feel like my illness wasn’t as important or i wasn’t as bad off as the other patient,I don’t want to be compared to another patient, pain is pain weather it is horrific or mild chronic pain isn’t something to compare.Living with pain that it unpredictable is very annoying. This minute may be very good the next may be bedridden.You can;t predict how you are going to feel so you can;t make plans.

lOVE ! happens to me all the time, so i ignore talking about my IC and health problems, because people just ignore it or say “huh well that sucks for you and go on ” . i’m not asking to be understood, all i want is support and people that care to know about my illness and what i am dealing with.

I TOTALLY agree with you on all of this, especially “I’d die if I had to live like that!” If I had a dollar for every time someone said that to me when I described my diet I could retire!! But, thanks to your article, I now have a response: “No, you wouldn’t. You’d adapt just like everyone else who has a chronic illness.”

Having an illness that most urologist aren’t able to make better is difficult to live with. I cannot take vacations or work. I am homebound most of the time and suffer with pain that medication does not help. I also suffer with chronic uti and kidney stones. Most medications and food make my IC worse. I suffer almost every day. I appreciate any understanding I can get. Thank you for getting information out to the public about IC illness. What we need most is understanding and a listening ear. You really have to have this illness to know how bad it can be.

“You wouldn’t tell a mother who lost a child at least she didn’t lose all her children.”

Your article is superb. You hit the nail on the head, and your comments are appropriate for just about every situation in life that requires the listener to be empathic to the person in need of a listening ear. I hope as time goes by, you hear words of comfort.

Also, the quote above from your post rang a bell with me from many years ago. Actually, someone did say that to me after the loss of my child. And she was a trained social worker.

Found your blog by accident, and as I too have IC, felt free to share what I have found that helps ME. I am hoping and praying that it might, perhaps, help you too. I understand the misery so well, the excruciating pain, the limited diet, the frustrating sense that you are doomed to a miserable existence, for the rest of your life. I was much older when diagnosed than you are, so I am doubly sorry for your suffering….so much longer to bear it. In any case, this is what I have found that helps me live an ALMOST, normal life. #1. Cystoprotek. Available online. All natural. However, even my urologist recommended it. It helps some enormously, others not at all. It is definitely worth trying, just in case you are one of the lucky ones. #2. Waterfall -D Mannose. Also all natural (the drug treatments, as you know, are all miserable choices) The D-Mannose is a miracle! Google Sweetcures.com, and read the history of the two owners, both IC sufferers. After taking Cypro (sp?) and suffering from the wretched side affects it had, I vowed to never take it again. However, that left me with intractable pain from an infection of my ulcerated bladder. I am sure you know the feeling! Within hours of taking the Mannose, the pain vanished! I now take two every morning, just to treat my bladder well. #3. Acupuncture. I am almost amused, as I read what I am writing here. I was NEVER a believer in “natural” cures, always trusting traditional medicine to do the job. When it failed me and I was miserable, I had to try something else, and wonder of wonders, so far all the “natural” things I’ve tried have helped. I was also VERY skeptical of acupuncture, however, after two months of treatment, to tamp down my over active immune system, I can honestly say that I am seeing improvement. In any case, I do know how much you are suffering, and I pray that some of these things might help you, as they have helped me. May God bless you and your family! In Christ, J. Blatty

Yes, yes and amen to all of that! I am 22 yo and have 3 chronic illnesses, IC being the most recent and the second one that requires major dietary changes (Celiac Disease being the other). My youngest sister is also now dealing with some of these and still undiagnosed with something we assume will be really rare and bizarre! We have heard all of those you’ve mentioned! Mostly the unsolicited advice! Agh!! Just cause your friend went gluten free to try to lose weight, doesn’t mean you know anything about eating as a Celiac! It is very hard to know what to say. I’m a nurse, and when I encounter situations like this, I find that just very sympathetically saying “I’m so sorry…” with a kind touch on their arm or back will ease the moment and let them know to talk about whatever it is if they want to.

I tell myself sometimes “At least it’s not cancer” when I get mopey about my illnesses, but can’t stand when someone else says it to me!

I know you are no longer blogging, but I just found your blog via googling for something on IC. I’ve loved what I read so far, especially your wedding! Such inspiration for someday! Thankfully my best friend has IC (not good for her, but good for me) and while her’s is an old diagnosis and mine is new (two weeks!) she knows and understands my pain which helps so much in coping! So thanks for blogging and I look forward to reading through your archives!

Remember Blueberries for Sal?
This is my little blueberry patch on a hill. The spot for me to sit, reflect, to share, and to be wonderfully messy with blueberry stained lips and grass stained pants. To bask in the sunlight and share my encounters with bears.
Please, feel free to join, as I figure out my faith, marriage, and all that life has to offer.

Blueberries for you, too?

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